The story of Sam

Ellen Lutton

Jul 17 2012 at 3:00 AM

Hoping for a miracle ... Ellen Lutton at 34 weeks pregnant.

I sink down into the couch and shut my eyes as I feel my uterus tighten again. One, two, three, four ... I count 20 seconds for this one. "It's definitely happening," I say to my husband. He looks at me, his eyes mirroring the dread I'm feeling, and he gets up to ring my mother.

I walk painfully upstairs to get dressed and pack my hospital bag thinking, how stupid, I should have had it packed by now. Knowing what was coming. Quickly, I throw it together. Knickers, some pyjamas and my pink dressing gown. Maternity bras. Breast pads. Sanitary pads. The camera. My items barely fill a third of my suitcase and I bite my lip, knowing what's missing.

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We arrive at the hospital and go straight to the pregnancy assessment unit. I give them my name and the receptionist gives us a sympathetic look as we take a seat in the waiting area next to another pregnant woman. Pregnant Woman grins at me in between her contractions. Rudely, I look away. I cannot fake a smile for this woman brimming with joy and anticipation. I hate her. The tears spill over.

Because we are "special", we get taken into a curtained-off room. A midwife takes my blood pressure as I tell her I am 21 weeks pregnant. That I have been contracting all night. That we are waiting for our baby to die. That we have been waking up, every morning for the past two weeks, wondering whether he's alive or dead.

I also tell her, feeling panicked, that he is supposed to die first, in utero, before I deliver him – not like this, with my body going into labour while he is still alive inside of me, kicking hard.

People kept telling us we were "so brave" but it was really the opposite. We had decided, essentially, not to decide. We would just love this baby as long as he was with us

Surprisingly, my voice is steady.

"I don't want him to be born alive," I say. "The doctor said he has no lungs, that he won't be able to breathe." My voice cracks. "I don't want him to suffer."

The midwife tries to comfort us. "In all likelihood he won't be born alive, won't survive the stress of labour at this gestation," she says gently. She holds up her hand. "Because your baby is only 21 weeks, he's very, very small. Like this small. You'll probably only dilate to about five centimetres before you need to push. He should be born very easily."

Born very easily. I want to throw up.

But it's a false alarm. My belly, strapped to a monitor, shows no real contractions. My obstetrician says I am not dilated, effaced, anything. He says they are Braxton Hicks and sends us home.

I am supposed to be feeling happy that my baby is still alive, and in a way I am. But I also feel gutted. The wait for our baby to die continues. I want it to be over. I am so tired. So scared. And so, so sad.

We were at a routine 19-week ultrasound, where the only thing we were worried about was getting some good 3D pictures, when we were delivered The Bad News. My husband, Phil, and I already had two children, Eve, 5, and Tommy, 2, and had the blissful naivety of those who have never experienced loss.

On referral from the first sonographer, I underwent a lengthy scan at the foetal medicine unit at the Mater Mothers' Hospital in Brisbane. I knew it was bad when we were led into a room with armchairs and handed a box of tissues. Our baby had a congenital cystic adenomatoid malformation (CCAM), essentially a huge lesion where his lungs were supposed to be. It was so big it took up the entire chest cavity, pushing the heart over and squishing it up against the chest wall. The doctor could not see any normal lung.

The doctor also said the baby was hydropic, with excess fluid in its abdomen, placenta and chest cavity, which was causing its heart to fail. I heard the words "near universal mortality rate". Our baby was expected to die in utero within weeks. We had two options: to "interrupt" the pregnancy straight away, or wait for the baby to die on its own. We had to make a decision within days.

I was in disbelief. What about in utero surgery? I'd seen it done on TV shows; couldn't they do it here? I was answered with a gentle "no, not for this particular condition".

My husband cried quiet tears as we drove from the hospital, and I sat in silence. I could still feel this baby kicking hard inside of me. So strong, and yet dying. We'd also found out our baby was a boy.

We decided to continue the pregnancy. People kept telling us we were "so brave" but it was really the opposite. We had decided, essentially, not to decide. We would just love this baby as long as he was with us.

Once we had made our choice, we felt momentarily elated. The pressure of having to make a decision was gone, lifting our spirits and uniting us. We would get through this. What was happening to us was crushing but we were so lucky to already have two beautiful children. They were very much here and still needed us; to be taken to school, made Milos and tucked into bed with a cuddle. But in the shower every night, where I sang a lullaby to my baby son and told him how much I loved him, that I wished he could stay with us, I wasn't so brave. I cried and cried; for me, for Phil, for Eve and Tommy – and for him.

20 weeksSeated at the dinner table surrounded by my closest family members, Tommy burps loudly. We all laugh. Then we discuss whether to have our baby buried or cremated. "I prefer a grave site," I say. "I'd like to be buried with him eventually."

My dad throws around some prices of grave sites and I'm grateful to him for helping me focus on the practical things. I make a list in my head of what we'll have to pay for: a coffin, flowers, the funeral director. A birth certificate. A death certificate. Phil leaves the room. My mother's mouth trembles.

Since making the decision to continue the pregnancy, I have felt numb but strangely calm. Because once this baby has died, I'm terrified of how sad I'll be. I'm anticipating a sense of devastation that I have never known before and for my sake, as well as the sake of everyone around me, I'm saving the point at which I'll lose it for after the stillbirth. Until then, I'm desperate to focus on something tangible and keep my imagination at bay, so I swallow my tears each morning, smile, and take to the things I can control.

I find out we'll still get the baby bonus, even though we won't get the baby. The lady from the Family Assistance Office tells me we'll also be paid the Maternity Immunisation Allowance. "Are you serious? The government will give me money to immunise a baby that isn't alive?" I ask in disbelief.

"Well, obviously the baby doesn't receive the immunisations – but you can still claim the money ..." she trails off uncomfortably.

I borrow books from the library about stillbirth and force myself to read harrowing real-life stories. I learn about what will happen after I give birth to my baby, what forms we will need to fill out and how long we can hold him before he's taken away to the mortuary. I read about how I am likely to feel. How Phil is likely to feel. And how we should tell Eve and Tommy. Whether they should see their baby brother after he's born.

I chat to women I have never met on a parenting website; women who have been through a stillbirth. They offer me support without reservation; without knowing me at all.

I nearly call the Stillbirth and Neonatal Death Support (SANDS) service but I stop, feeling silly. Although I'm grieving, my baby hasn't actually died yet. I'm living in limbo, not really fitting in anywhere.

Despite feeling alone, in reality I am far from it. Flowers, cards and messages pour in from everywhere. My family and friends make us meals. Everyone, it seems, is praying for us, for our baby boy. The Loreto nuns, the Carmelite nuns, my mum's friends from university, my daughter's prep class – they're all praying we get a miracle. I am so thankful to them, but never for a second do I believe we'll get one.

22 weeksStanding perfectly still in front of the newborn clothes section, my heart starts thumping loudly and I break out in a hot sweat. The sales assistant approaches, smiling. "Can I help you with anything? You look like you could use a hand. You mustn't have long to go now!"

I don't bother correcting her. What would I say? "Oh actually, no, I'm only 22 weeks, my stomach is just this big because I'm full of extra fluid; a symptom of my baby's condition – but you're right, not long to go now, because my baby should be dead within a week or two."

Instead, I just smile brightly and nod, telling her I'm having a boy. It feels good to be speaking with a total stranger about my pregnancy as though it's normal, as though I'm going to get a baby at the end. It feels nice to pretend. She shows me to the newborn boys' clothes and I touch a soft blue jumpsuit.

"I'll need the smallest size you have," I say softly. I want my son to be buried in something lovely, something soft, something that is going to keep him warm, even after he's cold.

24 weeksWe take a holiday, then I go back to work. I'm also still pregnant. We're confused. Shouldn't it be over by now?

We go for another ultrasound and see the lesion, still very large and very bright on the screen, our son's tiny heart still shoved up against the wall of his chest. It's beating, though, and he's kicking his little legs furiously.

I smile, despite myself. "He's putting up a fight," I say. Much to our surprise, our new specialist, Dr Glenn Gardener, who is the director of the hospital's foetal medicine unit, agrees and says it's promising that our baby has got to 24 weeks. Our baby is no longer hydropic, although this could regress. He orders steroid shots for me, to try to stop the lesion from growing any further.

We laugh hysterically and sob loudly – we cannot believe it. We've been given a sliver of hope and we cling to it immediately.

Dr Gardener warns us it is still a long shot, to not get excited, that even if our baby does manage to make it to term without dying in utero, it's very possible he still won't have lungs and will pass away after being born. We're not really listening. We're looking at each other, our eyes wide and shiny. Our minds are whirling with the possibilities and all I can think is: a chance, a chance, our baby has a chance.

28 weeksI'm feeling permanently nauseous. It's a sick feeling that won't budge, no matter how many episodes of Gossip Girl I watch for distraction. Today, it's worse than ever. We've just returned from another quick dash to the hospital after I realised I hadn't felt our baby move all night but it's another false alarm. His heart, despite still being squished, is beating normally. The doctor tells me the slow foetal movement is a side effect of the steroid injection I had the day before.

Now that we've been given hope, the thought of losing him is making me crazy. Phil bears the brunt of my stress, as all good husbands do. "I just want someone to tell me how this is going to end!" I scream at him. "I can't take this any more!"

I'm sobbing and he's hugging me tightly, my baby bump wedged conspicuously in between us. He soothes me as he always does, pushing aside his own sadness. "He's going to make it, hon. I can feel it. He's going to make it."

I so want to believe him. The thing is, he doesn't know. Nothing about this is definite and the unknown is killing me.

36 weeksChristmas has been and gone and we're all still hanging on. We'd received some good news around 30 weeks, when the doctor said he thought the CCAM had stopped growing, because he could now see a small amount of normal lung tissue. It was now likely that he would be born alive.

We were warned again that our son's survival still depended on whether he'd be able to grow enough lung to breathe with in the final 10 weeks of the pregnancy – but we had taken the news greedily. Now, at 36 weeks, I was being scanned for the final time. I could see it, the minute the image flashed up on the screen. There it was, his little heart beating madly away. In the middle of his chest. Not squashed up against his chest wall, but in the middle, where it was supposed to be.

The doctor grinned. "This is exactly where we would like to see his heart today. It means the lesion has shrunk. I can also see a good amount of normal lung here, too."

We're all laughing and I'm sweating.

"Obviously, we still can't tell what his lung function will be like until after he's born – he'll probably still need time in intensive care – but this baby is going to survive," he says, shaking his head. "For a baby to do this is incredibly rare. We would see something like this happen maybe once every 20 to 30 years."

We're grinning stupidly. We have to start preparing for a baby! I think of the spare room at home sitting empty. We haven't set up or prepared a single thing.

40 weeks + one day"He's nearly here. Slow down, breathe; he's going to come quickly," says my obstetrician. My heart is pounding with anxiety. "Look down! Look down!" the midwife cries, so I look - and there he is, slipping out from inside me, his perfect little form covered in vernix and already I can hear him. He's crying and I know what that means: he's breathing.

The obstetrician turns him over on his back and we all watch his face, scrunched up in protest as he tests out his lungs to maximum effect. I'm bawling, Phil's bawling, the midwife is welling up and the obstetrician is smiling at us all.

"Let's call him Sam," Phil hiccups as they place him on my chest and I say yes, not being able to imagine any name more suitable. Samuel means "asked of God" or "God has listened" and I think of the hundreds of people who have been praying for his safe arrival and silently say thank you to them all.

Sam is assessed and, amazingly, needs no help whatsoever. He is four kilograms. He is breathing, feeding and alert, his big blue eyes wide open and staring at us.

PostscriptWe are all head over heels in love with Sam. Tommy and Eve fight over who sits the closest to him; Phil and I spend hours covering him in kisses and making stupid noises at him. A CT scan has shown that Sam has a working left lung and a very sizeable lesion still on his right. He will have an operation to have it removed somewhere between six and nine months old and after that it is expected a new lung will grow to fill the space where the lesion was. By the time Sam starts school, he should have two very normal lungs.